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CTF-sponsored study published on Internet support groups for parents of children with NF1

Staci Martin, Ph.D. (Licensed Psychologist, National Cancer Institute, National Institutes of Health), together with a group of researchers, including Pam Knight (Director, Clinical Program, Children’s Tumor Foundation), recently published an article in the Journal of Genetic Counseling, a publication focused on news, information and insight for genetic counselors, medical social workers, medical and laboratory geneticists, and other health educators.

Chronic illness in youth poses numerous challenges to the parents who care for them. Across various pediatric populations, psychological functioning in parents is compromised by the stress of having a child with special healthcare needs. This pilot study, Feasibility and Preliminary Efficacy of an Internet Support Group for Parents of a Child with Neurofibromatosis Type 1, investigated the feasibility and preliminary efficacy of an Internet Support Group (ISG) for parents of children with NF1. Participants were recruited through the NF Registry. Preliminary evidence suggests that ISGs may be a feasible and potentially successful method of providing support to parents of children with NF1.  To read the full abstract, click here.